Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: September 4, 2001

Robert’s Update BMT + 47

Robert is really irritated I am writing this update instead of paying attention to Barney. Robert had GCSF to help stimulate his counts to prepare for the latest blood draw. This blood draw was to be used for the next engraftment studies and to send to Philadelphia to check alpha mannosidosis levels to see if he now has the enzyme in his system. His counts were very good, platelets were 66K which means he is making his own platelets. His WBC was a whopping 9.0 and neuts are 7.59. Needless to say Mark signed release paperwork today and took a box of stuff home tonight. Whether Robert is fully engrafted, not engrafted or not a stable engraftment there is not much reason to stay at UCSF. Even if the nurses are wonderful and doctors are great I think Robert will be pretty thrilled to be home.

Marie said she really wanted to see where Robert has been for the last two months. My brave husband is going to bring the four siblings up to UCSF to help bring Robert home on Thursday. It is almost scary to be planning this.

We will miss our friends here and need to keep in touch forever. Everyone seems to be doing slightly better though some have received some new unexpected challenges that came up. I think they all feel it will be pretty quiet around here once we leave. Robert got a toy from Bailey today that he was pretty excited about. Actually I think I enjoyed it as much as he did. It is after midnight and we are watching Barney and Robert just asked for chicken. This kid is pretty unbelievable.